I have trouble at times staying awake while driving. I fell asleep, nodded out, the other day. No one was hurt but my car got a good bump from hitting the curb going z35mph. The background was I could barely move after being on my feet for an hour. I had my cane but I must have looked worse because someone offered to take me to my car. This is not narcolepsy. I attribute it to severe pain/fatigue. I know it sounds like the opposite should happen like now in the early a.m. I can’t sleep and am in discomfort. My friend calls the sleep or locked up episodes as “spells”. My friends tell me to slow down but I can’t otherwise I will focus on the pain. I did not take meds within 6 hours of driving. I was behind my medication. I know, stay ahead. Intake cymbalta 60 mg, tramadol 50 mg 3xday. That is it. Last yer I was on tabu petting max dose and it did nothing. I had bad withdraw symptoms when I went off it. I am afraid to take narcotics because I fear addiction. I need more relief. I feel like I will become a drug addict if I ask for anything more. I struggle. I grin and bear it. I have been housebound again since the last spell. I am sliding back downhill faster than I can blink. I am only allowed to do one outside activity per day. No driving allowed, again. I cannot believe I nodded off again. I have not had luck with The medical community’s awareness of CIDP. I have an appointment with a well known doctor in July. That is the earliest. I am told to go to the ER if I can 't stand it. I am on SSDI. I cannot afford the Hospital copayment for saline drip, CBC, POTASSIUM/MAG drip, Ativan for anxiety because I fear IVs (double DVT left arm 4 years ago from old IV line) and tramadol, ibuprofen, Tylenol alternating every 6 hours & a latacain patch. If I get approved for IVIG I will take the blood clot risk. I am trying to hold on folks. I have thought about throwing in the towel. This scares me. I prayed real hard last night. I want to be able to RUN. I feel so vulnerable when alone in public. I recently took a self defense course, with a cane! I can walk short distances but if I go to the mall or museum I need a wheelchair which I have. I cannot propel the wheelchair because of hands cannot get a grip, especially if they are out of my sight. I could not pull the trigger on a gun because my hands are too weak. My fine motor skills are very limited. I know focus on what you can do.
I have experienced what you are going through and now I can run. Keep that hope. There's every reason to believe you will get better with good doctors and the right treatment. In the meantime there are things that you can do that will help you feel better right now. I would call your local township and ask for a social worker. Explain that you are in dire need of help. They have ways and means to provide a motorized wheelchair so you can get out. Nothing helped me more to forget about my pain than getting out like you. Call your doctor and ask for physical therapy. They can assess and keep you at your best while your waiting for the appointment in July. They can also place orders for you to get a motorized wheelchair and any other aids that will make your life easier. Many places will pick you up and take you home with a wheelchair accessible van. I would also ask your regular doctor for a sleep study. One of the questions they ask, is if you have ever fallen asleep while driving. I don't know what the connection is but do know there is one and it may be a good place to find an answer. Ask your doctor to see a pain specialist. They can help manage pain without narcotics. Tylenol is really bad if you take it too often and for too many days. If your taking too much it may be making you feel worse. You can get potassium and magnesium at the drug store. I take them and they help a lot. I use Now Brand in powder form. It's not expensive and works great. You have to be careful you don't get dehydrated which adds to the pain. Drink lots of water and Gatorade. Heating pads also help because the heat opens you blood vessels. The same with hot baths or showers. Diet is the single most important change I made. I went gluten free and avoid processed foods. Nutrients are as important as medication. Ours bodies need nutrition to heal. Meditating can be so helpful with coping in this situation. If you don't know how, a good place to start is by looking into Gangaji. Another is gaming, computer or board games. They help take the focus off the pain at times when you can't get out. I hope any of this helps. CIDP is relapse and remitting. If you continue relapsing, loose strength and abilities go to the emergency room. Forget about the co-pay because it is nothing, zero, zilch compared to your well being.
I know it seems like you can't handle this anymore. What is the alternative? It sounds like you be dealing with depression. It happens with people who suffer from CIDP. Perhaps when your insurance approves the IVIG treatment things will improve.
Since you have history of DVTs I assume you are taking anti-coagulants. If this is the case, you have a lesser chance of another DVT. I've had 2 different pulmonary embolism. One in 2008 and 2010. I'm also on anti-depressants, imuran, prednisone, coumadin and other meds. I also have IVIG treatments every eight weeks. Talk with your Primary doctor and be very honest about your thoughts. YOU ARE NOT ALONE! THERE IS HELP AVAILABLE. Ask for what you need. CIDP is no joke and it takes us through sooooo many changes. Many Blessings to you. Keep Prayerful!!!!!
Oh and about sleep deprivation. I also have been falling asleep while driving and did not know how much until I had a sleep study. I stopped breathing 82 times a minute. Sever sleep apnea. Now I have a cpap machine and it is my best friend. I can not drive for another 6 more months to build up my reserve. All this according to my other neurologist. I have two different ones. One for my sleep apnea and the other for my CIDP. It is difficult to be sane with out adequate rest for mind and body. Also like the earlier post, since you have SSDI there are many services available to you. Make the call. And if the pain is too much, go to the ER and have them bill the copay. Medicaid should pay for it since you have SSDI.
Good luck to ya
Missy
I gave up driving just over a year ago as I just didn't feel safe behind the wheel due to slower physical reactions and extreme fatigue from CIDP, it seemed like the only alternative as I didn't want to kill myself or anyone else. Im lucky I have my dad to drive me where ever and as I used his car before I gave up driving the risk of putting his car off the road due to my condition was just too high.
Hi! I was worse than you but now I'm in remission... I would pee on my pants, soil myself and I had half of my face paralized...
My diagnose was in 2010. I didn't get out of the house until I could climb up and down the stairs properly... The house I lived in is full of stairs... My bedroom was in the third floor and the kitchen was in the first so I would be all day long climbing up and down and I was so tired that I didn't even want to get out of the house. I had to hold on to every fourniture in order to get to the stairs, and sometimes I would fall in the process. Both of my legs were affected. And my arms too... a little bit.
Now I can jump, run, ride a bike and I recovered my sense of feeling in my limbs. My face is still a little stiff when I smile but that's all.
I got depressed and I thought about throwing the towel... because of that and many other things... try to think in a positive way, it always works... talk about it with your family and friends. Ask for help if you need it. Shout if you need to shout too. It will all help.
I would fall asleep all the time... it didn't matter who I was with or what was I doing. When I was in hospital they would change my IV line and I wouldn't notice because I was asleep.
I had a sleep study because of that and they found nothing... everything was normal so doctors guessed it was just an attempt of my body to fight back. So they told me to sleep all I wanted. And I did and with that, pregabalin, IVIG (for only 5 days in a row) and rehabilitation.
Yesterday, since it was a rainy day, I was in pain... but when I got home I took a hot shower and I stayed there. I had even lost the sense of feeling in my legs so I decided it was time to rest as many hours as my body wanted to rest... I slept for over 14 hours and I woke up feeling tired but great. Nothing hurts and I've just punched my legs and it hurts! Hahahahha so I'm okay all over again... I would take a nap, though :P
I live in Argentina and we have a public healthcare system... and we also have a private one, but... translated to dollars I only pay 83 dollars per month and they cover my IVIG treatment...
What makes it worse is the waiting... the approvals and stuff. Here they don't wait until things get worse. They approve it right away and they start treating you right away. And they test you as soon as they see something isn't right.
Come to Argentina! Hahahaha :)
If you need to talk to someone, please talk to me. We're all in this together.
When my CIDP really flares up, the increased physical symptoms result in greater social isolation, leading to depression. Hardest of all is finding a way to focus on finding solutions to help me wobble to the right track. But we've found our way to this forum so we've found our way to help.
The replies already posted have shared excellent advice. I'd like to simply add my voice to those who care about what's happening to you. Things can be done to make you feel much better.
I gave up driving as soon as all of this started. I have at times felt well enough to drive, but haven't. Aside from the fatigue which is mind numbing, is the weakness in my legs. My sister drives me everywhere. I never go anywhere alone. I do live alone in a very nice apartment in public housing. If I need help, my sister is a block away. I suffer tremendous pain. But I also do not want narcotics. I have an appointment at a pain clinic April 4th and one at a neuromuscular clinic April 9th. My regular neurologist has basically given up on me. I hope I can get the help I need in Iowa City.
I have a very similar problem! The CIDP was only diagnosed this year after a car accident, I have numbness on left side, horrible burning everywhere and muscle tremors and weakness. I still walk and drive with hand controls but I have episodes where I will be fine and then I get so tired I feel like I am being dragged down a tunnel! Only way to describe the sensation. If I have the opportunity, I can usually rest for about 10 min. And I am ok. I have noticed that it happens more when I am over 7 on the pain scale for a while, pushing myself at work or refusing to rest. I have been out of control for almost a year with this disease my neuro just says stay active as long as I can. We have to stay Safe,Sane and Strong!
I have scars on my chest from all the times I’ve fallen asleep while drinking coffee. Yes it hurts!
*For all of us with CIDP, it’s not curable!! You will most likely always be on pain meds. Don’t worry about being addicted, take care of your pain.
Two things work for my unrelenting pain, besides Tramadol and naproxen, try the Fentenayl patch. It is great, put on one day take off 3 days later. Try it this really really works.
The second is medical marijuana (trust me this was a hard decision cause I’m a retired cop). You can get it made into candy, or cookies. Anytime you have pain pop a piece of candy in your mouth and pain is gone. You do not have to smoke it to get wonderful results.
Between the patch and medical marijuana I’ve been able to reduce all my pain medicine by 100,000 mg less a month. That makes it worth while.
Stop driving during the troublesome hours and always have someone with you. Only you know how you’re feeling. If you feel like you may fall asleep because you had a rough night, don’t drive if optional.
I hope this helps all if us that read these comments.
Have you been check for obstructive and central sleep apnea and thyroid funtion??
Ask you Doc.s
Hi Mark, what state are you in? Medical marijuana is not allowed in most states. Or am I mistaken? I take Tramadol 50mg q6 hrs. I really think the marijuana will help my pain.
Thanks
Robin
When I drive and feel fatigued I pull into a Peking lot and rest for several hours then I press on .